Monday, March 25, 2013

How a Bill Doesn’t Become a Law

A Parent’s Response to Idaho’s S1114

This morning, I gave my first public testimony to the Health
and Welfare committee of the Idaho House of Representatives about S1114, a bill
that would consolidate currently fragmented mental health services into
regional health boards with increased local authority.

This sounds like a good
thing, and it is, as a 2008 WICHE report demonstrated.

So why was I there to oppose the bill in its current form?

Like all issues related to mental health and public
services, it’s complicated. My primary reason for opposing the measure was its
source of funding for those regional health boards. Rather than seek new appropriations, Idaho Behavioral Health Director Ross Edmunds proposed shifting funds from a Children’s Mental Health surplus.

Wait, hold on. Children’s Mental Health has a surplus?!?

The problem (and no one disagrees with me) is this:
currently, the only way for children in Idaho to get access to mental health
services is to be on Medicaid or to commit a crime. Yep, you heard me. If your
kid needs resources, you have to charge him or her with a crime.

The criminalization of mental illness, especially in children, is just flat out wrong. It's bad public policy, and it ends up being costly and dangerous.

Here’s my direct testimony to the committee:

When my 13-year old son was admitted to Intermountain in
December 2012, he screamed at the police officer who was trying to help him, “I
wish I had a knife so I could run at you and you would have to shoot me.” I
will never forget the look of horror in that brave officer’s eyes.

Later that week, my son’s social worker called and
recommended that I press charges against him to “get him back in the court
system so he can get the services he needs.” I am fortunate to have a good job
with health benefits, but many of the services my son needs, like PSR and
Occupational Therapy, are not covered by my insurance.

In “off the record” conversations over my many years of
interactions with the Department of Health and Welfare, well-meaning social
workers have suggested that it might be better for my son if I were a so-called
“welfare mom” because I could get better access to services.

I realize that the focus of SB1114 is on adult mental
health. But the lack of community support for parents of children with mental
health concerns means hours of missed work, unpredictable schedules, the
constant fear of a telephone call from the school, thousands of dollars in
medical bills for services that aren’t covered. My family suffers. My other
children suffer. And my son will be an adult all too soon.

We need a system that is proactive rather than reactive. The bill in its current form is still crisis-based
and does not really address the needs of children with mental illness in Idaho—in
fact, it actually takes money from Children’s Mental Health to pay for
reorganization of regional health boards, at a time when many parents, like me,
are told that the only way they can access help is through the courts. But I
believe that by focusing our efforts on early diagnosis, intervention, and
ongoing treatment for our children, we can save money and lives.

After hearing my testimony and the testimony of a NAMI
representative and mother Kathy Merce; Howard Belodoff, the lawyer who has been
prosecuting Idaho’s landmark children’s mental health case Jeff D. for 33 years, and Jim Baugh, Disability Rights Idaho Executive Director, the committee voted to send the bill to General Orders for
further review.

And here’s why it’s complicated. In drafting this bill, Ross Edmunds has done an
incredible job with limited resources. S1114 is a baby step, to be sure. But it’s
a baby step in the right direction, creating greater efficiency, providing more regional control, and improving access to resources for people with mental illness in crisis. Sending the bill to General Orders rather
than approving it as it stands runs the very real risk of allowing this
important legislation to die on the House floor.

So I left the House today feeling both glad and anxious. I’m
glad that my voice could be heard and that I could share my very personal concerns with the way we treat mentally ill children in Idaho. But I’m
anxious that because I spoke, in the end, nothing will happen.

Liza,When you first wrote and made public " I am Adam Lanza's Mother", I completely related to you. I have a son that is mentally ill and also a major neurological component. I am an ER RN and have tried to help him his whole life.Today, while driving I heard your whole interview on Serius radio. I pulled over and listened for the full time.I went home to re-read what you had originally written and I was shocked to see so many haters. Yes, you had a lot of support, but I had to not read the ignorant negative comments,as I take it personally as if I had written it myself because I know first hand what you go through. Anyone that interprets your work as anything other than complete bravery, intelligence and dedication to your child is so ignorant. I too, have "a normal" child. There is no comparison to the normal ups and downs with child rearing to the non-stop never ending marathon of being the Mother of a disturbed child. It's unnatural to separate yourself from trying to help them and yet you wonder how long you can take it and the toll it takes on your heart and body, the energy it takes from your other children. I just want you to know you did the right thing writing that and it made me feel not so alone. I could tell listening to you on the radio today that you are a highly intelligent woman who loves her child and has done her research. People that speak negative things have not walked in our shoes. Bravo to you!Colleen

I just saw your section on Nova on TV. Your son sounded exactly like my son did 20 years ago. He was bright, articulate and had rages seemingly without cause. He once threw a heavy iron chair when asked to pass the salt. Afterward he said he had no idea why he did that. His strange behavior started when he was about 8 years old as small tantrums (which the Dr. said was a phase he would outgrow) and escalated until he took a knife to his older brother. We had him committed to a mental hospital where we luckily had a marvelous Dr. who just returned from a convention in Europe about a syndrome called temporal lobe seizures which is the third and rarest type of epilepsy. I don't know what the current drug of choice is now, but he was prescribed Tegretol. It worked! Within a month we saw a miraculous change. Tantrums were much less frequent. After a few years he was even able to go off the medication (related to growth spurts). He is now 35 yearsold and has not had a seizure since is was 18 years old.In addition, he has his Masters Degree from an Ivy League school and is living a normal, productive life.

His Dr. said to us, that he believes many violent criminals have this disease but are not diagnosed properly.

I hope that you found the proper diagnosis for son and things go smoother in the future.

I just saw your section on Nova on TV. Your son sounded exactly like my son did 20 years ago. He was bright, articulate and had rages seemingly without cause. He once threw a heavy iron chair when asked to pass the salt. Afterward he said he had no idea why he did that. His strange behavior started when he was about 8 years old as small tantrums (which the Dr. said was a phase he would outgrow) and escalated until he took a knife to his older brother. We had him committed to a mental hospital where we luckily had a marvelous Dr. who just returned from a convention in Europe about a syndrome called temporal lobe seizures which is the third and rarest type of epilepsy. I don't know what the current drug of choice is now, but he was prescribed Tegretol. It worked! Within a month we saw a miraculous change. Tantrums were much less frequent. After a few years he was even able to go off the medication (related to growth spurts). He is now 35 yearsold and has not had a seizure since is was 18 years old.In addition, he has his Masters Degree from an Ivy League school and is living a normal, productive life.

His Dr. said to us, that he believes many violent criminals have this disease but are not diagnosed properly.

I hope that you found the proper diagnosis for son and things go smoother in the future.

I remember reading your blog shortly after the Newtown tragedy, and relating to many of the descriptions you had of your explosive son. I was just wondering if you have ever looked into the PANDAS/PANS diagnosis to see if that might be a consideration for his diagnosis-- we also have a highly explosive son and it turned out to be caused by PANDAS (Pediatric Autoimmune Neuropsychiatric Disorder Associated with Strep), after quite a journey of discovery. Without some very fortuitous tips that led us in the direction to research PANDAS, I was also on the same path towards concluding that my son had a mental illness. Anyway, I just wanted to bring it up in case you have never heard of it, because if it is in fact PANDAS, there is a very different (and successful) treatment protocol for these children that are unfortunately susceptible to and debilitated by something as common as a strep infection that results in brain inflammation. We have been very much helped by the doctors at the NIH (Swedo et al) and their research, which as been life-changing for us. Just wanted to throw this out there in case you had not heard of it. Wish you the best, take care.

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I saw your story on the Nova special this evening and it rang a huge bell. I do not know if this will help you but I'd rather pass on useless information than hold back something that could make a difference.

When my brother was born he was like your son. He used to bang his head. He made repetitive sounds. He would fly into uncontrollable rages where he would claw you and scream and beat himself bloody. (This was in the early 1960s by the way.) Our family doctor was an "old country doctor" and his advice was to "spank him more". My mother was told that it was just "tempter tantrums".

Fortunately, my mother did not listen. Instead she continued to seek better care. She finally found a doctor who told her that he didn't know what was wrong but he thought that he knew who could find out. My brother was taken to Chicago Children's Hospital where they used a new fangled device called an EEG. (common now) What they found was that my brother was suffering from a rare form of seizure. (psycho-motor seizures) When the seizure would fire, instead of uncontrolled physical motion, it caused uncontrolled emotional activity.

There were only 2 drugs available in those days to treat seizures. Dialantin and Phenobarbital. My brother could not tolerate Dialantin so he was given phenobarbital. Within a day of starting his drugs, he was calm and never had another seizure again. His rages stopped. He was given a chance to have a normal life as was our family.

I don't propose to suggest that this is your problem but at no time in the special did anyone seem to suggest that this MIGHT be the problem. I just wanted to pass this on so that even if the chance is remote, it might be one more opportunity for you to help your son.

If you need more information from me, please reach out to me. I'll be happy to respond. dwreid55@gmail.com

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My son is 13. He has never been in the court system yet. but he has been in trouble at school starting in 1st grade. Your comment" constant fear of that call from the school" rang so true with me I found a support group in those words alone. I want to start a support group for mothers of aggressive children. I want your help. I live in Boise I have recently friend ed you on face book and messaged you my story. There is strength in numbers and I have quietly stood by. With this Bill now back on the drawing board, We mothers-- and fathers may stand a chance. I too cannot get PSR work for my son as my very well meaning but very absent husband makes far to much money, and I refuse to press charges JUST yet. I do not want him stigmatized. My son recently has begged for help. saying he will do yard work, and other odd jobs to pay the $20.00 copay for a therapist.THIS may have guilt tripped his father into paying for a therapist but WHY is this even an issue!!?? I have suggested his father an I divorce on paper so we can get the services.Why is it only people on Wealfare or the criminals get help??? What is wrong with our CLASS Driven arrogant society!?WE are NOT England! Why do we allow Class structure and socio economical boundaries to divide us as a nation?? I am upper middle class I am a mother to a child with a mental Illness. Does my son have to have a genetic disorder, Autisim, Downs, or be crippled before my coherts take my plea for help serious? I cannot get him on medicaid or other services because of our $100,000+a year income. This is not right!

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About Me

Liza Long, aka the Anarchist Soccer Mom, is a writer, educator, mental health advocate, and mother of four children. She loves her Steinway, her husband, her kids,and her day job, not necessarily in that order. Her book "The Price of Silence: A Mom's Perspective on Mental Illness" from Hudson Street Press is available in bookstores and online. The views expressed on this blog are entirely her own and in no way reflect the views of her employer (or anyone else, for that matter).